The construction of rare disease discourse on YouTube: highlighting a disparity between policy rhetoric and patient practices around public engagement [version 2; peer review: 1 approved with reservations]

Background: Policy rhetoric around the 6,000-8,000 rare diseases affecting 300 million people worldwide often focuses on public engagement. Meanwhile, medical authorities tend either to treat patients with rare diseases as pre-categorised data sources, proffer to them notions of technological self-care as empowerment, or recruit them as advocacy allies. Conversely, people living with rare diseases often mobilise and engage with one another in self-organised communities via social media to share discussion, information, and resources. How rare disease discourse forms on specific social media platforms, the role of different actors (including medical authorities and algorithms), and its relation to public engagement policy are poorly understood.

Methods: This paper examines data on YouTube video watching/sharing (gathered from YouTube’s API via DMI’s ‘Data Tools for YouTube’) through social network analysis (read through a controversy analysis lens).

Results: The paper identifies eight patterns – each revolving around different levels of: focus on rare disease content; engagement between content and viewers, i.e. through likes, dislikes, and surrounding particular videos; permeability of videos between categories; and repetition in viewers watching the same video. Across six of the patterns, the paper finds a rare disease issue-network forming, where discourse is constructed through three distinct communication strategies, each garnering a different form of engagement.

Conclusions: Overall, the paper highlights a disconnect between how rare disease discourse is enacted on YouTube and policy promises of public engagement, with potential spaces for dialogue often closed off by medical authorities. To close, the paper provides recommendations for how policymakers might engage with and facilitate more inclusive forms of social media interaction between specific rare disease related communities and clinicians to develop more meaningful forms of knowledge exchange.